New Year = Renewed Hope - December 30, 2009

I drove my daughter up to Newark airport this morning, so the house will be a little bit emptier. It was really good that she was here.

Pete has an appointment with the radiology oncologist on Monday, Jan 4. We will probably get the results of the pathology report then, but the fact that he has the appointment pretty much confirms that the tumor was not benign.

He spoke with the hematology oncologists this morning and they told him they'll be in contact with the radiology oncologists (offices are in the same hospital as his brain surgery, but on 1st floor) because the chemo will have to wait until he heals up a bit from the surgery but the radiation will probably start sooner.

That's about all we know at this point in time. Monday's appointment should yield more information about the plans for treatments.

To everyone who reads this, my wish is that you enjoy a safe and wonderful New Year celebration, and that 2010 brings health, peace and renewed hope to all.

Biopsy Results Monday? - December 26, 2009

Pete was released from the hospital Friday afternoon. We had a nice dinner and my sister came over just as we were finishing up. She and Gina made all of us laugh as they hula'd and boxed and flapped on the Wii Fit Plus I got for Christmas. Laughing felt good.

Pete's headache is slowly resolving itself. It's a good thing he's a pharmacy tech because he's able to keep all his prescriptions in order, and believe me, there are enough of them to open our own pharmacy!

The doctors all felt that the pathology report should be ready Monday. Until that's in we really don't know the actual plan for treatment, because the results from the biopsy will determine the course of radiation and chemo.

I'm just happy to have him home and he's happy to be here as well.

Best Christmas Present - December 25, 2009

Yippee! Got a text from Pete a short time ago. One doctor was in to see him already this morning and told him that he'll be discharged today! No word on when, but I told him I'll be in the car heading up to the hospital as soon as he lets me know.

Just now he texted me that another doctor will be in to see him between 11 and noon. It's 10:15 right now.

Thank you to everyone who has offered prayers, good wishes and encouragement during this very difficult time. May you all find peace during this holiday season that continues through the New Year and beyond.

Day 1 - Post Surgery - December 24, 2009

Today the roller coaster was on its way up, thanks to Dr. LaN, the oncologist who sent Pete for the MRI last week.

This morning we went to the ICU waiting room and met one of Pete's long-time buddies sitting there. He had just been visiting with Pete a few minutes when he was asked to wait in there because they were taking Pete for his post-op MRI. I know MRIs take some time, so we sat and chatted for a while and then I got up and took the gift
tray of cookies (Bruce had picked up a couple of them for me to give to the nurses) and went in to check whether Pete had returned.

As luck would have it, he had just been in the room a few minutes when one Dr. LaN came in to talk with him. She was the one we had seen on Friday and had ordered the immediate MRI. She was a bit perturbed because, just as a "wet" sonogram had been ordered, she had ordered a "wet" MRI (see 12/19/2009), but the doctor who did the MRI did not report the findings immediately. They were not called in to the oncologists until Saturday morning, which precipitated their immediate call to Pete alerting him to irregularities in his brain.

She talked to us at length, answering our questions with clear and detailed explanations. She exhibited so much knowledge, caring and concern that, as she spoke, I felt my whole being start to relax. Don't get me wrong, she did not offer us a rosy picture, but the way she presented the information certainly helped to allay much of the fear of the unknown that I had been feeling.

Though the pathologist most likely will not conclude the biopsy testing until Monday, the doctor gave us 3 scenarios. The first and optimal one is that it is a benign tumor. Not very likely, but still a possibility. The second and most likely scenario is that it is sarcoma and had its origins in the primary tumor removed last January. This scenario, though not optimal, will necessitate several weeks of radiation therapy and then most likely places treatment right on track with the chemotherapy that was already planned to counteract the lesions in his lungs. The third, another highly unlikely scenario, is that it is a different malignancy, but even in that case there would be radiation and chemo treatments.

She did not promise anything more than what she and the other doctors could deliver. They will be providing us with the tools and ammunition to fight the cancer: radiation, chemo, support and hope.

Gina and I visited with him again very briefly this afternoon. His father and half-brother were there when we arrived, so I just said a quick "hello", gave him his cell phone charger, and stayed about 5 minutes and left. It's almost 8 PM now and Bruce and I will be going back up to say good night in a few minutes.

The doctors are still working on alleviating his headaches. You can see the pain in his face but the good news is that he's reporting the headache pain has gone down from "9" to "6 or 7" on a scale of 1 to 10.
Having him home in the next day or two would certainly be one of the best Christmas presents I could get this year and it's looking very promising right now.

Surgery Day - December 23, 2009

Pete, Gina (my daughter, visiting from California for the holiday) and I arrived right on time to the surgery suite at 6:15 AM. Pete was quickly taken away and a short time later the nurse came and escorted me and Pete's father (my ex) into the pre-surgery area. Pete was all hooked up to the IV and the nurse was completing all the paperwork. First we were met with one anesthesiologist, and then a second joined him. They explained how the anesthesia would be administered and advised us of the risks. Pre-op preparation, they told us, would take about an hour and a half. (I guess I wasn't thinking at the time exactly what that meant and why it would take that long, but as soon as I saw Pete post-surgery I understood.)

A few minutes after they left, the surgeon (Dr. E) came in. He discussed the procedure, its risks and the basic plan of "attack", just as he had on Monday when Pete and I had met with him in his office. I asked about the length of the surgery and the doctor replied that it was a long one and should take anywhere from 4 to 6 hours.

By this time it was just about 7:20. Two men and a woman, who identified herself as one of Pete's surgical nurses, came in and offered to have us follow them down the hall as they wheeled Pete off to the operating room so we could wish him well and then go back into the waiting room.

We had no news until after 12:30 when the nurse came in to say that he was out of surgery and that the doctor would be in to speak with us soon. About 15-20 minutes later Dr. E came in and called us into a small private room, just big enough to hold the 4 chairs and one small end table that were crowded in there.

He said that the surgery went pretty much as he had expected, but I was disturbed by the feeling that I was getting from the tone of his voice and his general demeanor. He was concerned that the tumor was attached to the wall, I think he actually said "invaded" the wall, of the main blood vessel for the brain. He said that he could not take any wider margin in that area for fear of damaging that supply and that there may still be some cancer cells that were left behind.

I asked him about the directed radiation therapy he and the oncologist had mentioned to us and his reply was that those decisions were best left to the radiation oncologists.

We waited some time before we actually got to see Pete when they moved him from recovery to ICU. I mentioned earlier about the long time for the pre-op prep, but when I saw several small holes located very symmetrically around his skull it dawned on me that the doctor had explained that this surgery was computer guided by the 3D MRI done the day before. Obviously, they had to secure Pete's head so that it could not move even a hair's breadth so that the surgery could be as precise as possible.

We visited for a brief time. He was thirsty and was complaining of a very bad headache. They administered a shot of morphine, and then a short time later a second shot. We left, hopefully the pain began to subside some, and came home because there is a break in the visiting hours between 6:30 -8:30 PM.

It's just about 8 PM now, and it's 1/2 hr drive to the hospital. I'm leaving to go up with Bruce (my husband) to spend a few minutes with him this evening.

There will be another MRI of the brain tomorrow.

Immediate Surgery - December 22, 2009

Monday, December 21 - Pete's second round of chemo treatments were to resume this morning, so we were in the oncologists' office at 9 AM. Before they began, we met with one of the doctors, Dr. G, so she could share the findings of Friday's MRI report with us.

It seemed the "irregularities" were not just some minor irregularities. It was a spot located in the upper back, left side of his brain. She explained that this region contains the vision component and the headaches and what we thought were "optic" migraines were most likely the result of this mass pressing on the brain causing seizures. She spent quite some time explaining, examining, asking questions, but the recommendation was that we see a neurosurgeon as soon as possible.

When she finished, Pete went into the chemo "suite" and they started him off with IV fluids as normal. The nurse was on the phone and suddenly spoke to Pete. "You've got an appointment with the neurosurgeon. He wants to see you as soon as possible, and he wants you to bring the MRI films so he can look at them." I thought things were moving quickly before. Now they were moving at lightning speed.

This presents a bit of a dilemma. Here's Pete, hooked up to an IV, about to begin the chemo treatment that lasts 8 hrs. The MRI films are at the hospital 30 minutes away. The neurosurgeon's office is around the corner from the oncologist's office where we sit right now. Pete and I are discussing the logistics of getting the films up to the surgeon, when the doctors (oncologists & neurosurgeon) make the decision to not proceed with the chemo and get us on our way to the neurosurgeon.

We get in the car and plan on heading south to pick up the films, and then come back to the surgeon. We're not 2 minutes in the car when my son gets a call from the neurosurgeon. He will need the actual films eventually, but he can view the images online, so come right over to his office.

Considering Pete was an unexpected addition to the doctor's appointment schedule, we only waited about 1/2 hour before we were called into his office. Dr. E asked a series of questions, did a series of manual tests and some physical examination, and then called both of us over to see the MRI images on his computer. The white, quarter-sized spot was clearly visible against the dark background of the brain.

I can't even begin to remember all he said, but he was clear, confident and efficient. When we finished, we were taken to his scheduling assistant. She called in prescriptions for anti-seizure meds and pain meds because he believed that the "optic" migraines were not that at all, but actually seizures triggered by the mass in his brain. She also scheduled a sterotopic MRI (also known as “stealth” or "3D") and pre-op testing for Tuesday, moved one of his surgeries scheduled for Wednesday to a later date and put Pete in that slot.

So here's the plan. Today, Tuesday, December 22: Sometime today we pick up his MRI films shot on Friday. We go up to Monmouth Medical Center (where Dr. W-2 will be performing the surgery) around 9 AM to register for the 3D MRI scheduled for 10 AM, and then head to pre-admission testing. Brain surgery is scheduled for 7:30 AM, Wednesday, December 23.

The hospital stay should be 2-4 days so he could be coming home as early as Christmas day.

It will all go very well. It has to.

And the Hits Keep Comin' - December 19, 2009

I'm okay. At least that's what I keep telling myself.

We weathered the pneumonia, the edema, the first type of chemo, etc. We’ve continued to muddle through the tests, tests and more tests and were feeling pretty good about things finally starting to look up. Then came this past Thursday.

On Thursday I had some errands to run, people to meet and things to do pretty much most of the day and it started with meeting a group of my former colleagues, all now retirees, for our monthly breakfast to catch up on what's been happening in our lives, so I was out of the house before Pete had awakened. Somewhere in the early afternoon I got a strange text from him asking when I was going to be coming home and mentioning something about a doctor appointment.

I try to keep close track of his scheduled appointments and I didn't recall him having one scheduled but when I texted him back and asked about it he just said "nothing important".

When I did get home a little later, Bruce told me that Pete had gone out and was still out. When he finally got home and I asked him about the doctor appointment he said, "Remember when I mentioned my arm was a little sore and I thought I had just slept on it wrong? Well..." He pulled up his sleeve and showed me his arm, just a little below the elbow joint and the end of the scar where they had removed the mass. The area was all red, swollen and very warm to the touch. He had called his GP in the morning after he got up. They got him in for an early afternoon appointment so that was where he had been.

The doctor said she didn't know what it was or what may have caused it, and she couldn't imagine it being an infection because there was no sign of where any infections could have entered; no scratches, cuts or broken skin. But to be on the safe side, she prescribed an antibiotic (and we wonder why we have "super bacteria" and antibiotic-resistant germs) and told him to just go home and keep an eye on it. Famous last words. That's exactly what the doctor had said when he first found the pea-sized mass in his arm over a year ago.

That didn't sit well with me, so I started bugging him to call his oncologist. Since it was now about 5 PM, he promised he would call first thing in the morning. My stomach was in a knot so I spent the evening and most of the night in front of my computer working on developing salary guides (long story short: I was the president and chief negotiator for my local the last few years before I retired and was helping the union out by working on their new guides for the latest contract).

At 3:30 AM, I decided I had to at least TRY to get some sleep, and since I had pretty much finished the guides, I crawled into bed. I laid there and watched the minutes go by, one-by one, until I couldn't lie there anymore. It was now 5:30 AM.

Pete finally called his oncologist around 10. They told him to go immediately to our local hospital and arranged to have a "wet" sonogram of the affected area. The fear was that it was DVT (deep vein thrombosis) which can release the clot that will move to the lungs and if it does, the result is a pulmonary embolism. Great.

So off to the hospital we went. The "wet" part of the sonogram apparently refers to the fact that the ordering doctor wants the results immediately, as in "before the ink on the report is dry". When the sonogram was completed they told my son to just sit for a moment. A few minutes later the technician walked back into the room, said "the doctor who read the sonogram said it's not DVT and they'll be contacting you because they want to see you". He turned to walk back out of the room and Pete's cell phone rang. It was the oncologist's office. They told him that they made an appointment for him and wanted him up there to see the doctor. It was now about 12:30 and the appointment was for 2:30.

We stopped at the convenience store on the way home and he grabbed a quick sandwich for lunch, ran in the house, ate, and were back in the car heading up to see the oncologist. (Thank goodness we didn't have to go all the way into Manhattan to MSKCC.)

In the meantime, between Wednesday morning when he first noticed the painful, red, swollen area, and Thursday morning, the redness had begun to fade, the swelling started to go down and in its place there was a mass, about pea-sized, on his arm. It was similar in size to the original lump that had started this crazy roller-coaster ride.

Now I was really ready to freak out, but I didn't. We're in with Dr. LaN (another doctor in this practice) and she calls the doctor who had read the sonogram and starts asking more about what they had found. They knew that it was NOT a DVT, but could they tell what it MIGHT be?

She explains to us that because it was not "fluid-filled" that pretty much ruled out a cyst. So that means it may be a lymphoma. When I heard that, my heart jumped into my throat. "May be" are the words I had to focus on, because "may be" also means "may NOT be". In our favor was the fact that this lump just popped up overnight, as it were, and the doctor just didn't know of anything that could appear that fast.

As we sat there and Dr. LaN asked if he had anything else to say he mentioned that he had been having "optic" migraines and plain headaches lately. Now I don't know if you're familiar with an "optic" migraine, but I've had a couple over the years. There generally is no pain involved, and it's not like a migraine headache. It's more like you looked straight at a flashbulb when it went off, and the after-effect of seeing a black spot somewhere in you field of vision with a varying degree of "fireworks" going off in the area outside the spot. It can be mild enough to be a simple annoyance or it can be so dramatic that you can't even walk because you can't see anything BUT the spot and brilliant flashes. Duration, as well, can be short or lengthy.

This news started the doctor asking whether anyone had ever ordered an MRI of his head/brain. The answer was "no". Every scan, x-ray and MRI had been from the jaw line down through the pelvis. So before we left the office they were working on setting up for the MRI of his head ASAP.

Back to the small mass on his arm, the one that may be lymphoma. The only way to identify what it is is with a biopsy. So they began working on setting up a fluoroscopic biopsy as well.

So what does all this do to the start of his 3-day-long-all-day-long chemo treatments scheduled to begin Monday (which is the day after tomorrow at this point in time)? Since time is of the essence in this battle they will proceed as scheduled.

We left the office and a short time after we arrived back home around 5 PM they called with his appointment time for the MRI of 7:30 PM. We ate dinner and he headed over to the hospital for the second time that day. We'll probably get the results when we go in for chemo on Monday.

Finally home from the hospital, he was sitting on the edge of his bed, taking his shoes off, and began grumbling about not seeing why it was so rushed to get these tests done right away. I didn't say it, but what I was thinking was this: If the original doctors, a GP, when he first brought that little pea-sized lump to his attention, or the surgeon to whom the GP sent him when the lump had grown to grape-size, had moved a little faster, had not waited a moment longer, had not simply advised him to "keep an eye on it", and not told him "your insurance won't pay to have it removed because it's only cosmetic"; if they had been a bit more pro-active, he might not be in the position he is in right now.

From the moment I first learned of his diagnosis with soft tissue sarcoma I have been enveloped in a numb kind of feeling that continues even now. From time to time I do break down, but those times are few and far between. Every day I resolve to just put one foot in front of the other, keep moving forward, think positive. And I pray.

As I was typing, Pete came in. He was visiting at his father's this morning and apparently he got a call from the oncologist. There are some abnormalities on the brain MRI. More tests will have to be done.

Today is Day 3 of 3 - December 04, 2009

A few things changed - again. Apparently there was not enough time to schedule the MUGA scan, so they did an echo-cardiogram. I'm not thoroughly convinced that it was a time factor. My gut tells me that it may have has something to do with his insurance balking at paying for the test. Time, though, is critical and it would not have been in his best interest to hold up the treatments and waste time making a dozen calls to the insurance company, since his doctor assured us that the echo-cardiogram would be able to assess the heart function.

Tuesday he went in for the port. The procedure was scheduled for 1 PM and they told him to get to the hospital an hour ahead of time, so we arrived about 11:45. After about 1/2 wait, we were taken into a pre-op room where we waited again. About 1:30 a nurse came in and put in the IV line, but didn't hook it up to any fluids. About an hour later, someone came in and moved us to the surgery floor, where we waited until 3 when the doctor finally came in and explained the procedure. Finally, around 3:30 the nurse came in, hooked his IV up and he was taken into surgery a short time later. He came out a bit after 4 and I sat with him while he slowly woke up. We walked out of the hospital about an hour later.

During the 6 hours we were there, and not counting the surgery time, we may have had a total of 15 min of contact with hospital personnel, and that's being generous. I have to say that this hospital, which is supposed to have a great reputation as a long-time teaching hospital and is a noted trauma center in NJ, seemed to be the most unorganized and disinterested in their patients. Pete, who hadn't eaten all day, was ravenous by the time we were heading home, so we stopped for a few slices of pizza on the way, which he quickly devoured during the rest of the ride.

Wednesday he had his first infusion. They did the normal blood work and started the first drip around 10. He insisted that I not wait around the whole day, so I left around 10:30. We texted a few times during the day and I went back around 4. He finished up a little before 5 and we were back home about half past.

I ate a quick dinner and ran over to Costco pharmacy to pick up the Rx's that the doctor had called in for him. Thank goodness for medical insurance, because one of them was over $1,000! His copay on that one was $50.

He was a bit tired from the long day, but was ready for Day 2 the next morning. His father, who lives 1 street over and works just a couple of miles from the oncology center, picked him up and also brought him home after the treatment.

There were more Rx's that needed to be picked up and Pete was still feeling pretty good, so he went to Costco with Bruce and I. Since Pete's a pharmacy tech at Costco and has worked there since it first opened in the early 90's, it took him quite a while to make his way to the pharmacy area and back out. Word must have spread like wildfire that he was there because so many of the workers were finding him and chatting. He was even stopped by several customers, most elderly, who were some of his "regulars" at the pharmacy counter. Everyone was so happy to see him, asked how he was doing and wished him well. It must have made him feel pretty good and I have to say it made me proud to know he's the kind of person that elicits that kind of response from people, whether they are co-workers or customers.

Today is the final day of infusion. His father took him there this morning and I'll be picking him up when the day is over. So far, everything is going well for him. He's been getting the anti-nausea meds interspersed with the chemo and other drugs to counteract the bad side-effects, and has been taking all the oral meds at home as instructed. He was advised, over and over, to take the oral anti-nausea drugs for several more days even if he doesn't feel sick because if you wait until you start to feel sick, it's too late.

It's been our experience, and is in line with everything that I've read, that the 3rd day after chemo is when things generally deteriorate. Tomorrow is the 3rd day after the first infusion, so we'll be keeping our fingers crossed that the next few days go as smoothly as possible.

Friday Evening Update: Ok, he's home and exhausted. He just about got in the house, stumbled to his room, flopped down on his bed and fell fast asleep. I had to go to pick up his "Nulasta" injection for tomorrow. I thought the other Rx was pricey - this one has it beat hands down! One injection, just one, and the cost is just pennies shy of $3,500. How do people without insurance handle this?

Holiday Shift in Schedule - November 30, 2009

Because of the Thanksgiving holiday, everything has been compressed into this week. Today, Monday, he'll have an echo-cardiogram instead of the MUGA scan, tomorrow he'll have the port implanted, and the new chemo will be administered on Wednesday, Thursday and Friday.

I'm most concerned about his reaction to these new treatments with regard to adverse side-effects. I guess the best plan is to just take each day as it comes and deal with it.

A Change in Treatment - November 22, 2009

When the CT results were not what we had hoped for, Dr K (MSKCC) offered her recommendation that Pete change to a different treatment. There were no new lesions, a good thing, but the results were again inconclusive with some lesions increasing and some decreasing in size. Because of how these new drugs are administered, we discussed the possibility of going to a local oncologist rather than driving up to MSKCC. She gave us the name of a practice about 1/2 hour from our home that she felt confident would handle Pete's care as they have worked with a number of her patients who live in south Jersey.

On Friday afternoon we had a first visit with Dr. W. He and all the staff were very gracious and the whole atmosphere was comfortable and calming. He took us on a tour of the facility and he and the others we met explained in detail the procedures and treatments Pete will be receiving. Although everyone that we've dealt with at MSKCC has been wonderful and very caring, the environment is that of a sterile hospital, and coupled with the stress of driving into and through the city to get there seems just a bit unnerving, for me at least.

Because of the change to the AIM protocol, Pete will need to have a port implanted and he will have to undergo a MUGA scan. I had never heard of it, but apparently it is a nuclear scan similar to an echo-cardiogram but it provides a much better assessment of the status of the left ventricle of the heart. One of the chemo drugs in this mix can do serious damage there and they need a baseline before the first infusion to make certain his heart is healthy enough to withstand the treatments, and then will repeat the scans at regular intervals to monitor for adverse effects. These 2 procedures will be done in the hospital (not sure whether Jersey Shore or Monmouth Medical) this week. Chemo will begin the week after Thanksgiving.

Though the new drugs Pete will be receiving (adiriamiacine aka doxorubicin, ifosfamide and mesna) are known to produce significantly more debilitating side effects than the initial drugs, it is hoped that the lesions will respond more favorably. Dr K indicated that she will be ordering a CT scan after the first cycle as opposed to the normal timing which would be after the 2nd cycle. One cycle, in this instance consists of 3 consecutive, 7-8 hr days of infusion and 2-3 weeks of follow-up monitoring, so the scan will probably be done just before Christmas. Based on those CT results, they will either proceed directly to surgery (if the lesions do not respond as hoped for) or continue on with the therapy.

That's about all there is right now. Since getting the disappointing results about a week ago I just needed to step away from the computer for a while. I didn't feel like tracking my food or water and though I logged on to SparkPeople a couple of times, I just didn't have the "oomph" to post or blog. I'm coming out of my "funk" and hope to get back in the swing of things starting today.

Protein? - November 15, 2009

All results came back as close to normal as possible under the circumstances. Most of the anomalies are attributable to the side effects of the chemo. The one the doctor keyed into that was outside the normal range was the albumin number, which has to do with protein utilization and dehydration. Apparently, since my son has not been eating/drinking well or regularly, the doctor explained, this may result in edema in the extremities.

I have to say that they were very thorough in their testing - blood, EKG, ultrasound, x-rays, CT scan, just to name a few.

He was released with directions to keep his legs elevated and start eating more protein. He is also to follow up with his oncologist, of course.

Time Moves Slowly - November 15, 2009

I'm sitting here with my hands shaking as I type. My son woke early this morning and when he heard me stirring, called me into his room. His legs are swollen tremendously. He won't call the doctor until 9. I put pillows under his legs to elevate them but that's about all I can do for now. I've tried to convince him to make that call (it's 7:20 now; I've been up since a little after 5). I'll try again to get him to call, but I guess he takes after me, stubborn.

They Didn't Work - November 13, 2009

Ok, the chemo treatments (gem/tax) they've been administering are not getting the hoped for results. Time to change gears and try a different set of drugs. This time it will take 3 days (7 am to about 4 pm) in a row to administer this series of drugs. This will be a cocktail of 3 drugs referred to as AIM (Adriamiacin, Ifosfamide and Mesna). Since it has often taken us 3 or more hours driving one way to or from MSKCC depending on traffic and these drugs have a much greater risk of unpleasant side effects, particularly nausea, we were trying to figure out how to handle this.

Dr. K understood the difficulty the long drive presented and gave us the names of some oncologists who have worked with other patients from south Jersey. Their practice is about 1/2 hour from us. She's comfortable with their level of experience in dealing with this type of cancer and treatments. We'll probably still be going to MSKCC in Basking Ridge for CT scans and all of his results and care will be coordinated through MSKCC.

Today's results were not what we were hoping to get. I have a horrible feeling in the pit of my stomach but at the same time, I'm hopeful that these other drugs are the ones that will work.

Whatever He Wants, He Gets - November 11, 2009

Pete lost his appetite around the start of the second round of chemo. He says nothing tastes good anymore. There are some days when all he'll eat are a few pretzels; there have been days when he's eaten nothing. So when he does feel like having something, I'm ecstatic.

He had a craving for pork roll and cheese on a potato roll a few weeks back, so I make sure I have those in the house. He's eaten that a few times. Another day he felt like having meat lasagna, so I called the Italian restaurant down the road and got a take-out order. Of course, even when he does feel like eating that doesn't mean he's going to eat very much. He ate about 1/3 of the lasagna, so I split the remaining piece in 2, and froze them in case he might feel like having that again. The days when he actually eats some kind of food have become few and far between.

He's lost quite a bit of weight. I suppose it was fortunate that he had some to lose at the start of all this. He wasn't terribly overweight, but at 6'4" he was maybe 40#s or so over where he should be. Right now I'd say he's somewhere between "normal" and "thin", but he's got more chemo, then surgery followed by more chemo down the road.

At least he's still maintaining a pretty positive outlook and that's a really good thing. As for eating, whatever he mentions he feels like having, I'll make sure he gets it.

Oh, for those of you who are not familiar with "pork roll", aka "Taylor ham", it's this greasy pork, chopped and mixed with spices and shaped like a roll of bologna stuffed into a cotton casing (think spam, but not in a can). It has a very distinct flavor. It's a NJ original and has been around since the mid 1800's.

Didn't Sleep Well - November 10, 2009

Last night was a tough one. I had no problem falling asleep; I usually don't. However, I woke a little after 1 AM and tossed and turned until almost 3. Woke again a little after 4 but this time I fell back to sleep after my last look at the clock showed 4:47. When I woke at 6:10 I knew it was pointless to try to sleep any later.

I take Pete for his CT scan this afternoon, and that kept running through my head. What would we find out from the doctor on Friday? Would my son see the scan today and start worrying like he did last time?

Then there was the visit to my doctor on Monday. I've lost over 20#s, my blood glucose numbers are all within the normal range, my cholesterol numbers have fallen dramatically but still need to come down a bit more. All good news. But then the doctor told me that he's really concerned because my protein output is quite high and my thyroid is low. He's giving me 3 months to continue healthy eating, losing weight and exercising to see if either of these will normalize. As far as I know, neither had been a concern in the past.

My brain is still spinning.

Rescheduled - November 03, 2009

Because of the pneumonia, my son's CT scan and next chemo treatment have been rescheduled. He'll finish the antibiotics next Monday so the scan appointment is on Tuesday and the next round of chemo will begin that Friday.

VERY Good We Went to ER! - October 30, 2009

Pete got a call from the hospital this morning regarding the x-ray they took when he was in the ER there yesterday. The radiologist determined that he has pneumonia. He told them to call his chemo doctor before they prescribed anything. They did, and now we'll be picking up an antibiotic that was called into the pharmacy for him.

Very happy we did go to the ER.

Anotehr ER Visit Results in Reschedule of CT Scan - October 29, 2009

Sometimes things work out for the best.

We were getting ready to leave to drive up to the MSK medical center in Basking Ridge for Pete’s scheduled CT scan when he told me that he didn't feel well. I took his temp and it was 102. That precipitated a call to his chemo doctor at MSKCC in NYC and he was directed to go immediately to the local emergency room. They cancelled his scan appointment.

The drive to the hospital is just a few minutes so we got there a little after 10 AM. Because of the chemo and his weakened immune system, we were quickly ushered into an isolation unit. They did all the routine blood drawing and urine collection and contacted his chemo doctor to keep her apprised of the situation. It was about 1 PM when they took him for the chest x-ray.

We were waiting for the results when an aide brings a young man, probably mid-twenties, into the room and instructs him to undress down to the waist and get into the bed right next to my son's. She wheels a curtain/divider between the 2 beds (there was barely enough room for it to fit) and leaves. The man is coughing and wheezing and my son and I looked at each other, both of us thinking the same thing without having to say it.

A minute later the man's wife and toddler come in and she asks him how he's doing. "They said I've probably got a bad case of the flu" is his response.

With that I get up and go out to find a nurse, doctor or someone, anyone. My son did have the regular flu shot on the recommendation of his chemo doctor, but not the H1N1 shot. He's supposed to get one as soon as they become available. Understand that we have no idea what "flu" this man may or may not have, but whatever he's got, if he is at all contagious with ANYTHING, I want him as far from Pete as possible.

I find a floor supervisor and briefly but calmly explain the situation. She literally ran to find the doctor and within minutes a nurse came in and removed the man, then came back and apologized to us. Then the floor supervisor came in to check to see that he had been removed and apologized. Then the doctor came in and apologized. I noticed that they had moved the young man and his family to another isolation room.

We finally got the all clear for discharge around 3:30 PM. The ER doctor had checked all the test results with the chemo doctor and said that all came back consistent with the results that they have on record at MSKCC.

Once home, Pete called about rescheduling the CT scan. They told him to come in 4 PM on Monday. He was scheduled to resume the next round of chemo on Tuesday and that will be when the chemo doctor gives us the results of the scan.

Last time he had the scan it was also on a Thursday and we went for the chemo on Tuesday. I didn't know it until we were sitting in Dr K's examination room, waiting for her to come in and give us the results, but it was then that Pete told me that he saw the scan as they did it and it looked to him like the spots were larger. I could tell by his voice and his face that he thought the doctor was going to deliver bad news and he was preparing me. Actually, the news that she gave was that they were unable to determine because, yes, some spots had increased, but some had also decreased, and this is often the case following the first round of chemo treatments.

My point is that if he had the scan done today, and if he saw it and thought, as he did last time, that the spots increased, he would have had to spend another 4-5 days thinking the worst. At least, if he does see the scan when he has it done on Monday afternoon and then gets the report from the doctor less than 24 hours later, he will have less time to worry that he may have seen something bad.

The best case scenario, though, is that he does see the scan on Monday and the lesions have diminished in size and/or quantity. I'm keeping my hopes up that this is how it goes.

Back to Worrying About My Son - October 15, 2009

I don't know if it's the weather (cold, rainy, dark) that's affecting him, but he's hunkered down in his bed. I finally got him to eat 1/2 bowl of soup early this afternoon, but aside from that all he's had is some ginger ale.

I'm worried about him. Of course, this is the 3rd day after chemo, and that is when he usually has been feeling some unpleasant side effects. If that's it, then he'll hopefully start coming around in a few more days. The problem is that the chemo is cumulative, and it takes a bit longer to get back to "normal" after each treatment.

He's scheduled to continue this regimen for another 3-4 months.

I guess writing about it just helps me express my frustration instead of keeping it all cooped up inside of me.

Another Trip Put Aside - October 09, 2009

The doctor called Pete Wednesday morning and told him that he needed to come in for another round of blood work. He still wasn't feeling at all well. They called in some scripts and OTC meds for him to take so I decided to just put off the tentatively planned overnight camping trip for another week and hope for the best.

Well, the good news is that we just got back from MSKCC and his hemoglobin numbers are up, there's no sign of infection, definitely no bleeding. (insert BIG SIGH of relief!) They still have no reason for the shortness of breath or the burning in his legs other than some unusual side-effect from the chemo.

They're happy with his status, so his scheduled chemo treatment next Tuesday "is a GO!"

Trip to ER at MSKCC - October 04, 2009

Saturday morning my son was still not doing well. His blood pressure was still hovering in the low range and his heart rate was still high, getting close to 100. He felt warm to me so we checked his temp and it was 101.

He called the doctor and was told to get to MSKCC's Emergency care unit ASAP. It took him a while to just get from his bed to the car. Every move was such an effort. He was as white as a ghost and was having trouble catching his breath. It's almost 2 hr drive to the hospital when there's no traffic. It just happened that today there was a Korean festival/parade and traffic was being re-routed, roads were blocked so it took a bit longer, but we finally made it.

The nurse took his vitals shortly after we arrived. They ordered chest x-rays and blood work and started IV fluids. The doctor came in and examined him and was concerned that there may be a blood clot. She ordered a contrast CT scan and an EKG and said that he may need a blood transfusion, but they wouldn't know for certain until they got results from all the tests.

I asked the doctor about how long before we'd know anything and she said at least an hour. With that Bruce and I went down to donate blood, which took about an hour altogether.

We had just gotten back to my son's room when the doctor came in to report that overall the test results were good. He was dehydrated and his hemoglobin count was quite low. There was no clot, no sign of infection and as soon as they took some swabs to check for flu (he had gotten the advised flu shot about 2 wks earlier, just regular flu, not H1N1) and he finished more IV fluids, he would be released.

Today, Sunday, he is feeling much better. He has actually started to get up and walk to the kitchen a couple of times this afternoon. Hopefully, things will get better, at least until his next chemo treatment.

Blood Pressure and Heart Rate - October 02, 2009

The doctor was not able to determine what the rash was, but suggested to just keep it dry, monitor it and if it did not improve, see a dermatologist.

Yesterday my son was very quiet and pensive. Finally in the evening he asked me to take his pulse because he said his heart felt like it was racing and was going to beat out of his chest. I'm not a nurse and am not very good at this kind of thing, but I found his pulse and counted while he used a stop watch. It came out around 90. I called my friend and asked if we could borrow her blood pressure/heart rate cuff and went right over to get it.

The readings we got were BP 114/47 and HR 87. This morning it was 117/57 and HR had dropped to 80. He put in a call to the doctor who told him to just monitor it.

As the day goes on, it doesn't seem to be getting any worse or better. Right now he says he's got a terrible headache and just wants to lie quietly.

I really feel so helpless.

And Now a Rash? - September 26, 2009

Last evening Pete called me into his room because he wanted me to look at something. The "something" turned out to be a rather large, reddish area along his groin area. It almost looked like a burn and the skin was rough.

One of the first questions they ask every time we see anyone at MSKCC is "have you noticed a rash?" I told him to call them and let them know that he seems to have what may be a rash. He said that earlier the area was a bit itchy but now was not.

He did call and spoke to a doctor who told him to keep an eye on it, keep it hydrated, and if there was any change to call back. Well, it's morning, and he's still asleep, so I guess that's a good thing. I'll have to wait until he wakes up to find out if it's still there or has changed at all.

One thing I can say for the doctors at Sloan is that if you don't speak to one immediately when you call, they get back to you within minutes.

Some Good, Some Not - September 22, 2009

We spoke with Dr. K (MSKCC) regarding the results of last Thursday's CT scan before they started the chemo today. She said that they were a bit confusing because some of the lesions had reduced in size, others had increased and some are unchanged. One seems to have disappeared, but there is now a lymph node near his heart that is affected, but it was not in the previous scan.

She seemed cautiously optimistic but also very concerned about the mixed results. I asked her if it was at all possible that it is due to the fact that there was almost a month between the scan and the first chemo treatment. She checked the dates for each and said that might explain it.

If there were no changes or if there were only increases in the size or number then she would change to a different treatment, one that is less tolerable and has more pronounced side effects. She felt that the scan results were not definitive enough to warrant that change and so he will remain with the original treatments for 2 full cycles (about 5-6 weeks) and then another scan.

I would feel better about this if there had NOT been that stupid lymph node. And of all places, near his heart.

One Day at a Time - September 19, 2009

My son's in a difficult situation because his FMLA leave is dwindling and if he doesn't leave work he'll be cut to part-time because of his absences, and there goes his medical insurance. The cost of one treatment is 5 figures, and I'm not including the numbers after the decimal point.

Seeing him every day I didn't realize the change in his appearance until I took a good look at him when he sat down to dinner the other night. He is ghost white and has dropped quite a bit of weight. I sure hope these chemo treatments are doing as much damage to the cancer cells as they are to the rest of his body.

Today my daughter, a teacher in CA, is attending the funeral of one of her students. The boy, who was just a high school sophomore, passed away suddenly and unexpectedly.

I wish I could make things better for both of my kids. With my daughter on the other coast I can't even give her a hug when she needs one. At least I can hug my son.

Hope and Fear - September 17, 2009

Today Pete has the first CT scan since the chemo began. The doctors have indicated that they should be able to see some results, some change since the original scan. I don't think we'll be getting the results today because the scan is being done in the Basking Ridge facility and the doctors are at the main campus in Manhattan. He has an appointment there this coming Tuesday.

The treatments are beginning to affect him to the point where he is applying for disability. The people at work have been very supportive, but it's becoming very difficult for him to continue working. There is also a concern, because he works in the pharmacy, that his close contact with so many people who may be harboring germs, bacteria, viruses (including H1N1), etc. may jeopardize his health due to his weakened immune system.

I'm hoping that there will be such a marked improvement on the scan that they will tell us before we leave today.

Losing His Hair - September 03, 2009

Pete came home from work a little early today. He said he was just feeling a bit off and quite tired. While I was getting the dogs' dinners ready he came out into the kitchen and said, "Well, looks like I'm losing my hair."

Now, you've got to understand that my son began losing the hair on his head somewhere in his mid-to-late 20s and decided that he was absolutely NOT going to have a bad comb-over like his father, so... He's had a shaved head for years now. But he's had a very neat goatee for even longer.

When he started the chemo we had joked about not having to worry about going bald, but what he was holding up in his fingers when he made the comment were some hairs from his goatee. It would have been funny if he didn't say it the way he did. I think those hairs were a very tangible reminder of what is going on.

On the more positive side, I got an email from a teacher who retired from my school several years ago. Her son was diagnosed with cancer just a few years after I started teaching there, so I'm talking 20+ years ago. He was a freshman at Rutgers U at the time. She had written to tell me that she would be praying for my son and all of us.

I didn't know much about cancer back then, so I asked her what type of cancer it was. She responded it was osteosarcoma, and considered a "childhood" cancer that affects both soft tissue and bone, and though there are only several thousand cases of the soft-tissue sarcoma that Pete has, her son was only 1 of about 700 cases. He did lose his leg, but the good news is that he's still going strong. Pete's sarcoma doesn't affect the bone and is generally found in older people (by that I mean considerably older than my son who was 33 when diagnosed). Hearing that Martin faced this disease, but more importantly, a sarcoma, and survived makes me more optimistic. He also was treated at MSKCC in Manhattan.

And So It Starts Over - September 02, 2009

Tuesday the chemo started over with the single dose. Next Tuesday, the double dose followed by white blood cell booster on Thursday.

His reaction so far, is good. He wasn't completely wiped out like he was after the last 2 times. Tomorrow will be the real test, though, as he felt pretty good the day after each of the other treatments and didn't really feel lousy until the second day.

The 17th is the big day. That's when he's scheduled for the CT scan. The nurse said that if there is any change they should be able to see it then.

My routine gets all thrown out of whack when I drive into the city. I don't track what I eat on those days, at least not on the computer. I still keep track mentally, but I know I don't wind up as "balanced" as I do when I enter it into the nutrition tracker.

The fire out near where my daughter lives in California is still burning, but it is contained.

Tomorrow is another day.

Hoping... - August 25, 2009

Well, he's feeling pretty good. Friday was a bit of a problem - he described it as feeling like he had a bad hangover - terrible headache, dizzy, fuzzy, achy (of course I couldn't relate to that feeling, right?) so he didn't go to work. Saturday was much better and since its inventory time he didn't have to go in until 2 PM, so that gave him even more time to recoup and get back to normal.

Sunday is his day off, so back to regular hours yesterday. Inventory continues today, so he was out the door before 5 AM and plans on going fishing on his boat with a couple of his buddies this afternoon since he'll be getting off early.

I've noticed that he's not coughing. Before he started the chemo he had been coughing, the kind that sounds as if there's some congestion and it had been getting more and more frequent. I was getting nervous every time he coughed. The coughing started to subside several days after the first chemo treatment. He coughed less and less frequently each day since and I haven't heard him cough at all the past couple of days. Could this possibly be a good sign?

I asked him if the doctors had told him how far into the chemo they might be able to detect a change in the lesions in his lungs. He said that they told him it could be as early as after the first round, but certainly after the second. If his cough was in any way connected to the cancer then it may be that the chemo is doing its job. I sure hope that's what's happening.

The CT scan is scheduled for Sept 17th, the week after he's completed the second full course of treatments. That's when we'll hopefully be getting some good news.

2nd Chemo Down - August 19, 2009

Yesterday went well. We were early enough to get to the Holland Tunnel before the rush hour traffic really hit. No trouble weaving through the city traffic and only a short wait at the parking garage. We arrived at the shuttle just before it left.

Up to the 5th floor, signed in and within minutes they called him in for his blood work. Shortly after that the nurse had us in to give updates. There was about 1/2 hr wait before he went in for the infusions; 15 min worth steroid drip, 90 min first med, 90 min second med. The doctor (Dr. K) came in about mid-way through the treatment and went over some things, asked more questions and let us ask questions. She was very calming and caring. In fact, everyone we've dealt with there is so nice. I think about some of the difficult cases they must deal with on a daily basis and I wonder if I would have the fortitude to do it day after day. We were out around 1:30. There was virtually no traffic on the way home.

He napped some of the afternoon. I don't blame him, neither of us slept much the night before and we were up before 4 AM. He went to work this morning. My husband and I stopped by when we were shopping (he's a pharmaceutical tech in a local Costco pharmacy) and he looked like his normal self (not ashen, like he was after the first treatment last week).

Tomorrow we head up to north Jersey to the MSKCC center in Basking Ridge for his Nulasta injection, which is a white blood cell booster. This will be our first visit there.

Thank you to all who have sent their good wishes and prayers. I know they are helping.

Is It the Chemo? - Friday, August 14, 2009

When Pete came home from MSKCC on Tuesday, he looked to me like someone who had been through a difficult time. He was pale, and though he tried to be "up", it seemed to be an effort, so unlike his usual self.

He said he felt fine and that the chemo was not a problem, but by the next morning he admitted he was tired and chose to stay in bed instead of joining me on our morning walk. He was quiet and rather pensive most of Wednesday, but Thursday morning he said he was fine and we went for our walk around the reservoir.

On our walk he told me that he was again having trouble breathing and that he had not slept well in several nights. It was plain to see that he was tired, as the pace he set was not our normal speed. I'm tall (5'7"), but he's 6'3" and for both of us a good part of our height is leg. Most people I walk with have trouble keeping up with me and tell me I'm a speed walker. One of the reasons that I like walking with him is because I have to hustle to keep up with him. Thursday's walk was more like a stroll.

He passed on the walk again this morning. Again, he didn't sleep well, and said that he thought he had run a slight fever over night. He looked even paler this morning, so I was getting more concerned. He got up when I came back from my walk and I made him a Swiss cheese omelet and an English muffin for breakfast and we sat and talked and drank coffee before he retreated back to bed.

He napped off and on throughout the morning. I had a physical therapy appointment at 1, and when I got back, Bruce and I went to run some errands. On our way home he and I talked about mowing the lawn after dinner, but as we pulled in the driveway, there was Pete on the riding mower, just about finished with both front and back yards (it's about 1/2 acre in size). When I looked at him I was surprised and happy to see that his color was back to normal. He said that he had started feeling better and better as the day went on and so decided the lawn needed some serious cutting.

One of his buddies was coming down for a visit this evening. Pete had called him this morning and said that he wasn't feeling up to taking the boat out, so they were just going to hang out. By the time Domingo arrived, however, Pete was just about done preparing the boat so off they went, fishing poles at the ready.

I'm hoping that these not-so-good days since the chemo were due more to nerves and anxiety than to the actual chemo. Tuesday is the next infusion. That one will take 3 hours, twice as long as the first one. They will repeat the one med and introduce the second, which is the one that reportedly has some not-so-pleasant side effects.

1st Chemo Down, More to Follow - August 13, 2009

The first chemo treatment, an IV infusion of gem/tax (Gemcitabine and Taxatore aka Gemzar and Docetaxel) is done. All went well, he has had no adverse reaction, but the doctors had said that he should not have any problem until perhaps after the second, and even then it may take several treatments before he notices anything unpleasant.

He's got a full calendar of appointments. Chemo on Tuesdays at MSKCC in the city, and then Thursdays there will be CT scans and white blood cell monitoring at their satellite in Basking Ridge, NJ. He was told that this would most likely go on for the next 6 months, so surgery is on hold until then.

My biggest concern is his breathing. We don't really know for sure whether the difficulty is associated with the cancer in his lungs or is it anxiety/weather related since we've had such miserable humid conditions. I'm hoping it's the second.

We switched rooms around. It was good, since it gave all of us something to focus on and keep our minds and hands occupied with something other than the treatments and wondering how things would go, etc.

Since we had to pack up the "computer room" first, store everything from there in the family room, paint what was going to become the "new computer room" and reassemble everything, we've been without internet access for a few days. I have to say the whole thing went very smoothly. The dogs were a bit confused, especially Scrat. I spent quite a bit of time on the floor taking apart and putting back together the computer furniture (too big to fit through doorways otherwise) and poor Scrat kept trying to snuggle up to me or get in my lap or lick my face every chance he got.

But it's done and I'm back to tracking my meals and exercises and spinning the wheel for my points. I just wish everything else in my life was back to normal.

Chemo Begins Tuesday - August 09, 2009

Pete will be going for his first chemo treatment. His father will be driving him to MSKCC. I had asked if I could go also, but he said he wanted to have the one-on-one time during the drive up and back. I told him I'd be on "stand-by" just in case there are any problems.

He's been coughing and not sleeping very well. Consequently, I haven't been either.

We're switching rooms around, moving him into the master bedroom; my husband and I will move into the other bedroom (currently our computer room) and Pete’s bedroom will become the new computer room. All the rooms really need a good, thorough cleaning and we'll be able to do that during the switch. The master bedroom is large enough so that he'll be able to have an area for a couple of sitting chairs, maybe even the futon, so that if he has company they'll have someplace comfortable and private to sit and visit. There are many more reasons why I want to make this switch, but most I hope will never come to pass.

How Do You... ? - August 08, 2009

I wondered how to bring up Advanced Directives, Durable Power of Attorney for Medical Decisions and Wills? I found that the best way was to just sit down with my son and start to talk. As I began, I realized that he suddenly seemed to relax and he told me he was relieved that I had brought it up because he had been thinking about it and just didn't know how to say it to me.

We talked about things that no parent should ever have to discuss with their child. How I did not break down is beyond me. Maybe it's his strength and resolve to fight this cancer with all his might that got me thorough.

I cannot protect him, but I can stand strong with him. I have always been so proud of both of my children. They have grown into beautiful people, inside as well as out.

I just don't understand why this happened to him, to me, to our family?

Anxious for Chemo to Begin - August 02, 2009

On Thursday while at work, Pete got a call from MSKCC asking if he would be able to come in the next day (Fri) for the biopsy. He called me to see if I would be able to take him. Of course I would!

It turned out to be a needle biopsy, much less invasive than the originally planned laparoscopic biopsy, and did not require an overnight stay. The doctor who performed it assured us that either would render the same information. Results should be in early this week, probably Tuesday.

I want to call them and tell them to hurry up. Start the chemo, don't delay anymore. If the biopsy had been done as planned on Aug 6, the first chemo was to be on Aug 11. Please, please, move the chemo up. Waiting is more than I can stand.

The sooner they start the chemo, the sooner they will be able to operate. Anything to get this going. I know there will be problems with chemo, but this cancer is so aggressive they need to be more aggressive to try to hold it at bay.

I'm trying to be positive and optimistic, but I can't hold it together 24 hours a day. This morning I asked my husband to go with me because I needed to fill my car with gas. We drove around the corner and I pulled into the rear parking lot of the reservoir and parked. We sat there while I cried and he held me.

I still feel like we're in a bad dream and we'll wake up soon and everything will be back to normal. I'm so very much afraid at times and at other times I just feel numb.

Please, God, help us get through this.

One Day at a Time - Friday, July 24, 2009

The biopsy is scheduled for August 6. It requires an overnight stay, and they set up a bed for a family member in the patient's room so I'll be spending the night there with my son. They do the biopsy lapariscopically, as they will be doing the excision some time down the road, while a CT is in progress so they can guide the instruments.

The following week they'll begin the chemo. Two weeks on, one week off. It still all seems surreal and frightening. After the surgery to remove the sarcoma at the primary site the doctors were pretty confident that the tumor had been removed completely, but it seems that some cells may have already begun to relocate but were too minute for the first after-surgery scan to detect.

The doctors advised him that sometime between now and the first chemo treatment he should consider having his sperm frozen. I can't even imagine the thoughts that must be going through this young man's head. He's already been through so much, even before the cancer. My heart just aches for him and I feel so helpless. All I can do is be there for him and love him. The sad fact is that as much as I wish and pray, I can't make it go away.

News Not Good - Thursday, July 23, 2009

I got a text from Pete. He had gone to Memorial Sloan-Kettering CC in NYC by himself to get the results of his first follow-up CT scan. All he said in his text was that he will need chemo and that he would tell me more when he got home because he was waiting to see another doctor.

I felt numb. He didn't mention another surgery, so I assumed that the cancer had not returned to the original site. With soft tissue sarcoma, the lungs are the most likely place where this form of cancer will metastasize.

He had just started back to school this summer, completed both courses with A's. Things were starting to look up for him, he was getting ready to register for the fall semester and was talking about what he would like to do when he completes his degree.

Sometimes life bites.

Surgery to Remove the Primary Tumor – Initial Treatment

It was mid November. Things suddenly began to move very quickly. I went with Pete to his first appointment with Dr. S, a local oncologist. Although the reason for the appointment was terribly frightening, the doctor’s manner was very soothing. He was extremely professional, but not at all condescending. Calm and compassionate, he helped both Pete and I to relax a bit because we felt we were working with someone who was extremely competent and confident. After he had done a physical examination of Pete he spoke with us and explained that it would be necessary to have a biopsy done for an accurate diagnosis but that all the signs pointed to a “soft tissue sarcoma”. He ordered special CT and PET scans and initiated arrangements for the biopsy.

Within days the scans and biopsy were completed and Pete returned to Dr. S to get the results. They confirmed the suspected diagnosis. The doctor recommended that because of the rarity of this particular cancer (only about 1% of adult cancers are identified as sarcomas) Pete should seek treatment at a cancer center where they had the experience to effectively deal with sarcoma. Pete chose to go to Memorial Sloan-Kettering Cancer Center in New York City.

We were into the holiday season, starting with Thanksgiving. Fitting in appointments, tests, and more appointments during this hectic time was difficult, but we got it done. Surgical resection of the site is generally the first treatment. Pete underwent surgery at MSKCC on January 26, 2009, to remove a soft tissue sarcoma from his left arm.

Dr. S-2 was the surgeon who performed the removal. He met with Pete’s father and me at the conclusion and felt confident that he had successfully removed the mass with sufficient “margins”. Because of this, he felt that the adverse effects of post-operative radiation therapy outweighed the advantages and for the same reason, no chemo therapy would be administered. The size of the mass was approximately 5.2 cm x 4.2 cm x 4.5 cm. The stitches closing the incision were rather large, which the doctor explained allowed him to close the wound without resorting to the use of a skin graft taken from Pete’s thigh.

Pete’s recovery had some rough spots. Because of the size and depth of the incision, the amount of tissue, muscle and skin removed to assure that a sufficient “margin” was achieved, he was sent home with a Jackson-Pratt drain. For those who are unfamiliar, this is a plastic bulb at the end of a tube, the other end of which is in the surgical site. Every morning and evening we had to “milk” the site and record the amount of fluid we removed. He suffered two infections that prompted visits to the MSKCC emergency room for antibiotics during the first few weeks before the JP was removed.

Eventually, everything did heal and Pete underwent some physical therapy. Much of the muscle on the underside of his upper arm was gone, so the therapy helped him regain some of his strength. Winter turned to spring and on warm days that Pete had off from work you could find him working on his boat, preparing for summer, the season he enjoyed the most. He had lived close to the Jersey shore all his life and had inherited a passion for ocean fishing from my dad. He was feeling pretty good and had his vacation planned around fluke season.

Soft Tissue Sarcoma - The Beginning

One day, about 3 years ago, my son, Pete, called me in to look at a very small lump on his left arm. It was located about mid-way between his armpit and elbow, and felt about the size of a small pea. I suggested he show it to his doctor, but told him that it was probably nothing more than a cyst.

He did go to his doctor, who told him pretty much what I told him; most likely a cyst, but to keep an eye on it and if it got larger or became painful to come back.

There was not much change for over a year, but one day he again asked me if I thought it had gotten bigger, and it had. I would say that it was now the size of a good sized pea. He went back to his doctor, and again was told that it was probably nothing and to just keep an eye on it.

It wasn't very long after, maybe a month or two, when Pete again asked me to take a look. I was shocked to see that the lump had grown to the size of a grape. It scared me because of the sudden and dramatic change in size. This time, when he went back to his doctor, the doctor recommended that he go to a surgeon to see about having it removed. He gave my son the name of a local surgeon and my son called and made an appointment.

The surgeon must have had a busy calendar, as the first available appointment was about 2 months out. On that day, Pete was just about to walk out the door when his cell phone rang. It was the surgeon's office and they needed to reschedule because the doctor had an emergency. The first available appointment was 3 weeks later.

We were getting concerned because the lump was now the size of a walnut, and it was causing discomfort when my son moved his arm because it was actually rubbing against his side. I was relieved when he finally went to the appointment, but when he got home he was very upset. This surgeon had been very dismissive and told him that he could remove it but it was only cosmetic and his insurance company most likely would not pay to have it removed.

The first thing my son did was to find another surgeon and call for an appointment. When he explained that he felt this was rather urgent they gave him an appointment about 2 weeks out. This surgeon looked at the mass and immediately recommended an oncologist, and told my son that when he called to set up the appointment to tell them that he may have a "sarcoma".

My son made the call to the oncologist and the first date they offered was about six weeks away, so my son mentioned that the surgeon had told him it may be a "sarcoma". That one word prompted an appointment just 3 days later.

That one word would change our world.